Tuesday, January 1, 2013
Just a year ago...
I didn't know what CHD meant. Congenital Heart Defects impact 1 in 100 babies born each year. Teeny tiny walnut sized hearts can be and are operated on at just 3 days old, by cardiothorasic surgeons that are part genius, part sociopath (you'd have to be) and part miracle worker. I didn't know I could hand my tiny puffy baby over to these super heroes and trust them so much. I didn't know it would be so scary or foreign, but I knew I could do it because of the support of family.
I didn't know much about genes and chromosomes, but I know a lot more now. I know that missing pieces, extra pieces, and extra copies of these little blue prints of life can have such varying and scary and wonderful effects. I know now how much that diversity of outcome can be a blessing, and while I hope for proper medical intervention to make life easier for all those born with chromosome abnormalities, I wouldn't want to 'cure' Clara. I'm proud of her missing pieces. I didn't know that before I met her.
I didn't know that hospitals have valet parking. That Primary Children's has a 3rd floor balcony off the Children's Surgical Unit. That the U of U women's center is so good at helping new moms who had to send their baby across the bridge to Primary, that they would save meals for me or schedule my meds around visiting my baby or welcome my family as their own during such a hard stay and that they would laugh with me when I was experiencing the strange, invasive, embarrassing and crazy process of recovering from childbirth.
I didn't know what it would sound like when Clara first cried. Because of the intubation and exhaustion from surgery, the first time I heard her cry was a tiny, raspy, mechanical sound. We were in the middle of CPR training with the nursing staff and I heard a strange noise coming from Clara's bed. It took me a few minutes to ask if that was her crying, and when the nurse confirmed, I almost cried myself. Part of me was so excited to hear it and part of me was so sad that she was almost a week old before I heard her make any noise and worse, I hadn't realized that I hadn't heard her cry until I heard her cry. Shouldn't a mom be aware of things like that?
I didn't know how cute it would be when Clara would lay on Todd's tummy and grab his facial hair. Her dad has the best chops around.
I didn't know how glad I would be to return to work, to find order in my spreadsheets and meetings and projects. I never know when Clara will get mad or sick or needy, but I have more control in my work life. I need that balance, it comforts me.
I didn't know so many new words would be added to our vocabulary. Tegaderm, tubies, pulse ox, kCals, conduits, stents, gavage, cath lab. My mom used to be a volunteer at Primary's, giving directions to people coming in to the hospital looking for various departments. She told me she had heard of the cath lab a million times, but didn't know what it was all about. We all know that intimately these days. And where it is. And how they will show you a video of them placing stents in your baby's heart. And how it will make your heart stop for just a second, to see those things going in and messing with her heart. It might be the scariest and cooling thing I've seen on video.
I didn't know that, by law, there is a heart mom awake and available on Facebook 24x7, 365 days a year. I always know I can get advice or comfort, no matter the hour, and the information is much more reliable than WebMD.
I didn't know how much I would miss some aspects of our pre-Clara world. We don't get to spend as much time as we once did with our closest friends, and we have no money to do anything with them when we do have time! But I also didn't know how thoughtful friends and family could be, how much we would benefit from the time and love and babysitting skills available to us. We are so grateful for that.
I didn't know that a baby who slept through the night (12+ hours!) for the first 6 months of her life would change her sleeping habits and start waking up for food at 1:00 and 4:40 and maybe again around 7:00. Who told her babies eat at night?
I didn't know how bad I would feel when I let the stress get to me and lashed out at my little sister at the family reunion, or got short with my mom when she was explaining something she had read online about not having a thymus, or when I was short tempered at work when Dave asked me a perfectly reasonable question about ISYS.
I didn't know how much formula cost. Or how upsetting it is when tons of it leak out of a bad port connected to a feeding tube. And all over the floor. And the baby's bed. And you just know it's going to smell awful tomorrow.
I didn't know how many times this year Todd would walk in to the living room and catch me crying while reading yet another blog about families going through similar things. There are so many stories of hope and sadness and joy and despair. That's the thing about kids. You just don't know what you don't know.
I didn't know that this season of The Office would be the funniest ever, and would once again be one of the best cures for a bad day.
I didn't know we would say goodbye to our little dog Gir. It was way too early and we weren't ready. I didn't know how much Clara would love laughing at dogs-she shows no fear, just a desire to giggle and grab their eyeballs or ears. The few months she had with Gir gave her something that she loves so much, just like her dad.
I didn't know that joining the heart world would mean taking on the fears and joys of so many, and that I would love it. We have vicariously experienced infections and transplants and feeding issues and new babies and saying goodbye to sweet heart angels. Every day I think about these families. It has quite literally changed my life.
I didn't know how fast Clara would grow and change. Going through photos tonight, I am shocked to see this little-old-man-sack-of-potatoes change in to a smiling baby, discarding her oxygen and feeding tubes, and now sitting, crawling, and pulling herself in to a standing position. Since spending a night with her cousins, aunts and Nana last week, this Sweet Pea has not stopped laughing and teasing and talking to us. They seemed to have flipped her silly switch.
I didn't know about Nap Nannies and Puffs and the proper etiquette for changing a really stinky diaper in a very busy bathroom at Old Spaghetti Factory. What do you do when the garbage can is so far away from the changing table and you're trying to balance the baby, the dirty diaper and dirty clothes and the clean clothes and the possibility that you have poop on your hand and wait, is that a little girl singing to herself in one of the stalls?
I didn't know I would love becoming a mom, more than anything I've ever done or imagined. Bodily fluids all over the joint and all.
"There are years that ask questions and years that answer." I was trying to decide which this year was for my little family. I think that this was a year of answers, resolutions, endings. The culmination of the years of marriage Todd and I spent building a strong foundation for our family. And just as surely as the answers to what that means to us are being delivered, like any good toddler, it leads to more questions of why and how and what is next. I am glad I didn't know what this last year would hold, and I'm glad I don't know what I don't know about this coming year.